From the Editor: Occasionally we run something that is so sensitive and private that we will do so anonymously. When we do, you can be assured we know the author and can vouch for what is being said. Such is the case here. The issue described is one all of us must take seriously, for it threatens serious medical care at a fundamental level. Here is the article:
I am a woman in my late thirties. I was born blind, developed diabetes in my twenties, and last year my husband and I were diagnosed with "unexplained infertility." What's unexplained infertility? Great question; I'd love to tell you, but I can't. From my perspective it's just another thing that my body can't do. It's the most primal of functions that seemingly comes easy to everyone else in the world except for me.
I'm used to coming into unfamiliar life spaces. As a blind woman of color, it doesn't faze me when I hear the "We've never had a blind person do this or that thing before," or "Are you sure you're in the right place sweetie?" or, my favorite, "Who's going to help you?" My skin has grown thick against these low expectations, so I don't know why it surprised me to face huge amounts of ableist treatment from the fertility experts I trusted to help make me a mama.
I am a grown señora. I manage a career, my finances, a household, and many other aspects of life as anyone else would. So why, as I am redressing after a very invasive ultrasound, is a nurse squatting down in front of me insisting on putting my feet into my underwear? I was beyond mortified and beyond angry. I was also afraid. If this nurse doesn't trust that I can put my own clothes on, is she going to flag my file to social services because she assumes I can't possibly raise a child? Am I being watched? Would the fertility clinic purposely botch our treatments so I can't conceive because they don't believe I should?
A few days later, during a video appointment to go over results of the genetic tests we took, we were offered the option to "edit" out any "broken" or abnormal genes, including blindness. I cried so hard after that meeting. My husband tried to reassure me that maybe they offer this to everyone. They gave us waivers to sign declining the genetic manipulation of our future baby, and I thought we were done with that conversation.
I eased into treatments as calmly as one can when trying to balance expectations, hopes, odds, costs, medications, and timing. Since the cause of our infertility is unexplained, this means that we had two options. The first is known as an IUI or intrauterine insemination. This is where sperm is inserted into the uterus with a catheter. It is a minimally invasive procedure. The second is known as IVF or invitro fertilization. This is a more involved procedure where eggs and sperm are joined together in a laboratory and then implanted back into the uterus. IVF is also where they would do their "edits." We opted for the IUI.
Walking in for our first cycle appointment, I was a ball of nerves. Thankfully, the staff at this location was minimally thrown off by my blindness, and we quickly developed a system that worked for all of us. I didn't have to over advocate. They asked how they could best help, I answered, and we were good. However, this location is only open Monday through Friday, so if we needed monitoring or procedures done on weekends, we had to go to an alternate clinic.
I'm sad to say that the alternate clinic staff was consistently bad with every visit. From grabbing me without consent to talking about me as if I wasn't in the room to asking if my husband and I had recently gotten our eyes dilated were the questions they asked in front of all the other waiting patients. They added this layer of exclusion that complicated my experience unnecessarily. My efforts to speak up and prove that I'm capable of handling my own medical affairs did nothing to minimize their ableism. We were also approached a second time about editing our baby's genes.
My husband and I decided early on that we would stop at IUI. We knew we didn't want to do IVF. We ended up going through three cycles which were unsuccessful. Part of my decision not to move on with more treatment is because I don't think I could handle being heartbroken by more failed results, coupled with the knowledge that I'd have to continue interacting with this clinic, whose staff I have to fight just to be treated like any other patient. It is ironic that the medical field is one of the hardest areas for self-advocacy. It's like "Do no harm ... unless the patient is disabled. Then, all rules, courtesy, and etiquette go out the window."
It has been hard reshaping my dream of becoming a parent. I spend lots of time grieving what could have been. I also wonder if I could have fought harder, spoken up louder, pushed back more forcefully, or made a difference in how these medical professionals treated me. I ask myself over and over again, did I fail my almost-baby?
I don't know how to end this article in a neat way. This journey has been messy. I know that I'm not alone in this battle with the medical community about our rights and capacity. I also know that it's not over. If we choose adoption, there will likely be more confrontations about our abilities as blind parents, and as our child grows, we will confront similar situations. This is where I feel inclined to end on a positive note. I should say that I'm hopeful and looking forward to the next chapter. Honestly, I don't know if I'm ready to be optimistic yet. This is the end to a painful chapter, and I'm allowing myself to sit with that. If anyone in the medical profession is reading this, know that your interactions matter.